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Lay Summary

Organ transplantation is a lifesaving procedure that prolongs the life of people with kidney disease. Although it is well known that, in comparison to dialysis, transplantation improves the quality of life (QOL) of patients with end-stage kidney disease, the recovery of physical health and other aspects of QOL post-transplant is poor. Many of the challenges that affect QOL are not related to the malfunction of the kidney, but rather to the negative effects of the experience and physical and psychological problems that are carried over from the transplant phase and that cannot be readily addressed as part of the standard outpatient clinical care. In preparation for this project, 51 kidney transplant recipients were evaluated by a personalized questionnaire of QOL to identify particular areas affected by the experience of a kidney transplant. The top identified areas were physiological function, restrictions in leisure, work and socialization, nutrition, mobility, pain, mood/emotions, fatigue and health. Optimization of QOL post-transplant is best managed by the patients themselves. To be able to do so, however, patients need to be provided with training and tools for self-management.

Self-management is a lifelong task where patients are coached to maintain wellness through the development of five core skills: problem solving, decision making, resource utilization, forming patient/health care provider partnership, and taking action. We will develop a workbook to help kidney transplant patients develop the skills and attitudes required to effectively take charge of their health. Our project is in line with the Kidney Foundation of Canada’s mission, as its overall goal is to improve quality of life of kidney transplant recipients.